In the month of November 2003 I was feeling unwell. I started to feel general malaise and loss of appetite and weight. Painful rashes started to appear around the soles of my feet, ears, cheeks and this exacerbated to an ulceration of my mouth. My parents initially thought this was part of the growing up process but they became concerned so arranged an appointment with my G.P.
Friday, 30th November, 2007 and my life changed forever. I had not been feeling well for quite a while but kept putting it down to hormone problems and my hysterectomy that I had had a year earlier. I had invited people over for the evening and had everything prepared so decided I would get a quick workout in and went off to the gym like I normally did. Because I was short of time thought I would just do a warm up on the treadmill and two rounds of circuit.
My everyday battle with the Wolf (alias SLE) ,fibromyalgia, arthritis and degeneration in my spine and facet joints. Just a little thing to deal with in life, along with the other less significant problems such as Sjogren’s Syndrome, Hughes (Antiphospholipid) Syndrome, pleuritic pain in the chest due to fluid around the heart, headaches and muzziness because of changes to the vessels in the brain (found on tests at St Thomas’ Hospital in London)…. Just to name a few symptoms and problems I have to deal with every day and with looking so well all the time, no one really believes that you feel so awful every day, apart from your loving family and very special and caring friends.
For about seven years now, Angie has been bugging me to write something about my experience with lupus. Finally, just as she seemed to give up on me, understandably so, I suddenly found some inspiration and reason to do as she asked. I will explain why later.
My problems began in March 1998 while I was at work. I started with flu like symptoms which progressed to fevers, followed by night sweats. Three visits to the GP and a bunch of antibiotics later, I had not improved at all.
This may or may not have been the start of my Lupus but it certainly was the start of me having ‘classic ‘ recognisable Lupus symptoms.
I woke one morning feeling as if I had the world’s worst case of flu. I was very fit (ex WRAF Officer) and healthy, rarely ill, certainly never been in hospital and never complained when I had minor ailments, so there was a clue of how ill I was in the fact I absolutely insisted upon going to the doctor. The doctor didn’t examine me at all but just recommended rest and aspirin or something similar. I went home but still felt dreadful, as if I had flu but a hundred times worse, I felt like I had gone ten rounds with Frank Bruno and lost the lot!!
It all started around the age of 17. I would get stiffness in my wrists, which was making driving uncomfortable at times. I thought nothing of it, for the first few months, but then I started to get stiffness and swelling in my knees as well. Being so young, I didn't imagine it to be anything important or worth worrying about, but my mum was concerned about it and she encouraged me to go to the family doctors.
I must start by saying I haven't found it easy to sit and right my story. Putting the last four years down on paper proved to be difficult. For one I didn't want to physically write it ! Frustrated because I haven't quite mastered using the computer, much to the amusement of my 14 year old daughter Grace, whose assistance is unending! Secondly because of the emotional journey recalling the last four years have been.
My lupus story really begins in 2004, despite the fact that I had suffered from other health issues (that may or may not be lupus related) before things went from bad to worse. Things turned sour over Christmas break 2004-2005. I noticed my need for sleep had increased dramatically and I found myself suddenly sleeping all day long. Attributing it to the stress of final exams being over, I didn’t think much of it. During this time, I also developed a UTI that wouldn’t go away. After several rounds of antibiotics, it was still coming back for more. Despite the pills, a couple times I was hospitalized in order to have intravenous antibiotics.
I was diagnosed with lupus in 1988 but looking back at some of the things that happened in the years prior to that, it would seem that it’s been around for most of my life. After a couple of years during which I was quite poorly and felt like a walking toothache, our super team at St Thomas’ sorted me out and got the lupus under control – special thanks to Dr Hughes, Dr D’Cruz and Sister Angie Barwick, my GP, Dr Warren who keeps an eye on me and not forgetting all the love and support from family and friends.
I will be 47 in July. I was diagnosed with Lupus in 1996. Before that I was experiencing new symptoms every day. I had to endure loads of checkups, blood tests, x-rays but no one was able to pinpoint the source of the problem. I went from doctor to doctor with no exact answer. They knew from my ESR report that there was something wrong but they did not know what was causing the ESR level to go so high and what the problem was. I was born in India and I have tried home remedies, homeopathy and acupuncture.
I'm a 46 years old black female married with two children age 26 and 18. I was first diagnosed with Lupus (SLE - systemic lupus erythematosus) in 1995. It all started with a throat infection and joint pains that lasted for several weeks. My doctor referred me to the hospital to see a rheumatologist and I mentioned that my mum had lupus. A test was carried out and it was confirmed within two weeks that I had SLE. I suffered with mild symptoms such as hair loss, fever achy joints and fatigue for years but was blessed as I only had to take mild pain medication and was able to maintain an active lifestyle and a full time job.
Hi, my name is Caroline Hill and this is my story.
In June 1996 I was a happy, healthy 30 year old woman, I ran a wine bar, had a good life, worked long hard hours and played hard too. I loved water sports, the beach and football.
A day out that summer led to my life being totally wrecked, I went to the beach on my day off to go surfing, by 10pm that night I was in my local hospital covered in what looked like a bad case of prickly heat! Over the course of the next few weeks I went from bad to worse, I could not find the words to even begin to describe how ill I felt; rash, sick, weak, burning skin, dry mouth, eyes like sands been kicked in them, so weak, no energy.
Lupus - WHO?
What, How, Why? These are some of the responses I had when I was diagnosed with Lupus at the age of 34, and are many of the questions I have if I tell anyone about 'my Lupus!'
It took quite a while for my diagnosis to be confirmed, but in 2008, when it was, OMG - What a Shock!! My husband was fantastic, and still is.
On 9th September 2006 a little miracle happened - our son Caspar Glemser was born.
My name is Maebh (pronounced Maeve) Glemser and I have been a patient at the Louise Coote Lupus Unit since 1998. I was diagnosed with lupus in 1994, although looking back with the benefit of hindsight; I had clearly had the symptoms since 1989.
Charlotte Parsley is twenty four years old and lives in Hitchin, Hertfordshire.
I first got ill in January in 1996 when I was ten years old. I kept waking up with stiff hands and wrists and eventually went to casualty to try and find out what was wrong.
The doctor gave me some anti-inflammatory drugs but the next day when I woke up I couldn't move.
"Yes, definitely lupus, lupus erythematosis," said the dermatologist. "This is a sort of autoallergy but don't worry, it's just your skin. Keep out of the sun and use this cream". Knowing that we were about to go abroad for a couple of years, she added "and don't let those foreign doctors put you on steroids!"
Firstly, let me tell you about myself. I am 31 years old and recently married to my soul mate and long term partner Tony. I am an incredibly sociable person and am lucky enough to have a lot of very good friends and the best family (OK, I am a bit biased!). Therefore it's not surprising much of my spare time is spent socialising but I also enjoy travelling, camping, walking, reading, yoga, cooking and am involved in some voluntary work.
I am a 39-year old male who in January 2008 had a violent cough, weight loss and pains in my joints which changed daily. My three year old son used to imitate my coughing as I was doing it so much! My GP thought it was a virus and described me as a mystery.
I then started have atrial fibrillations (strange heart rhythm), three times in 6 weeks, each resulting in hospital stays, the last one needing an electro shock to my heart.
At age 21 I collapsed and was rushed into hospital with severe renal failure. I was in intensive care for a couple of days and then back onto haemodialysis, a kidney biopsy was taken. My kidney started working for themselves again, which lasted for about a year until I had to go back to start peritoneal dialysis. I'm now awaiting a kidney/pancreas transplant.